Wednesday, May 16, 2012

Living Up To His Name

When we named our children we just went with names we liked. Some people have names that run through the family. Others have strong opinions about what their children should be called. Some reflect the parent's aspirations, their religion or cultural background, others the parent's taste in music or TV programme. For us we just wanted names we liked that wouldn’t cause embarrassment as the children grew. There is a Celtic theme running through our boys’ names but that is coincidental rather than deliberate.

Fortunately there was plenty of middle ground between Vicky and myself that we didn’t spend months vetoing each others choices.  

One thing we didn’t really consider was the meaning of each name. But with hindsight it would have been hard to come up with a more fitting name than Finlay. Recently, following a discussion about names following the birth of a friend’s child, I found myself looking up names on the internet. Finlay, “fair-haired courageous one”.

I can’t think of a more apt name. This last week has seen our fair-headed warrior more than living up to his name. He has shrugged off surgery, a collapsed lung and an infection with a smile on his face and is now safely back home telling all his preschool friends about his adventure and the big planes he went on.

Every day he deals with the trials of his condition, the constant testing, medication, the literal highs and lows. But he remains one of the happiest children you could ever meet. Life is just one big exciting adventure for him and he’s going to rise to whatever challenges come his way.

Welcome home my courageous fair-haired boy.

Friday, May 11, 2012

Finlay does it the hard way...again!

Finlay underwent surgery this morning to insert a cardiac catheter so they could plan the next step in his care. A minor operation. According to the American College of Cardiology, Cardiac catheterization is a common medical procedure that rarely causes serious complications.”

Sadly no-one told Finlay.

There is a bit of history here. When he was about 5 months old he was due to have a cardiac catheterisation. The day after arriving in hospital he developed an infection. This was at a time when he was a very sick child. His heart was failing and glucose control seemed a mythical concept so infections were not unusual (to be honest we’re finding glucose control to still be a bit of a myth but glucose management is a developing skill!). So it was a week of a screaming upset baby before the operation went ahead.

During the surgery the surgeons placed a small coil into his PDA, a small vessel between the pulmonary artery and aorta that should have closed after birth but didn’t. This is a fairly common heart defect and is easily rectified, the coil blocking the blood flow through the blood vessel and effectively shutting it off.

However, following Finlay’s op he started passing very dark red urine, the blood was passing round the coil and being shredded in a process called haemolysis. Once the surgeons saw this he was whisked into the operating room and the coil was taken out with another catheter.

His PDA was going to have to be closed surgically. In the end they decided that if they were going in they might as well fix a few other things at the same time. So he ended up having open-heart surgery and a quick two-day visit to hospital turned into a month-long stay.

Fast forward three and a half years and another cardiac catheterisation. This time the heart side of it seemingly went very well. The right side of his heart has grown well meaning that the major replumbing work that we thought he’d need might not have to happen. He may get away with just closing up the remaining hole in his heart and heading off to live a long healthy life. But not quite yet. They are going to leave it for a couple of years and then go back in and see if that’s the right decision.

So a really positive outcome. The proposed fix is the best option we could have hoped for and should leave his heart as close to normal as possible giving him the best chance of a long happy life.

But Finlay being Finlay he wasn’t going to let that be the end of it. He seems to have a penchant for the dramatic. So while under the anaesthetic his lung collapsed and he is developing a chest infection. He seems to be in a bit of discomfort after the op but has managed to eat something and is on the mend. However his oxygen saturation is down and he is being given oxygen to help. He was supposed to be coming home tomorrow but the doctors are concerned about him flying following his collapsed lung so it may be after the weekend before he makes it home.

Looking just a little sorry for himself

Tomorrow I’ll have to sit down with his brothers and explain that Mummy and Finlay won’t be here when they get home from school. I’ll try to make it clear that he is going to be OK and just needs a bit more time to get better but it’s more difficult with them this time. For his first heart surgery the boys were much younger, more accepting of whatever we told them. Now they are more questioning, querying anything they don’t understand. Hopefully I can provide soothing answers to whatever questions they have.

Knowing my boys probably their first question will be ”Can we have pizza then?” And, guilt-wracked, I expect I’ll concede. Maybe comfort food is what we’ll need.

Hopefully I’ll give them all the answers they need to be positive about the situation. Because, despite everything, I am positive. His heart is doing well and the rest he can deal with. He’s come through tough times before and he will again. He’s a tough kid. He may have one dodgy gene but the other 23,000 are bloody good!

Wednesday, May 9, 2012

Thanks for understanding Boss

Hey Boss,
Over the last few years you’ve been really great when it comes to my son’s condition. You’ve taken a genuine interest in his wellbeing, you’ve indulged my obsession with all things pancreas and heart related and you’ve readily accepted that sometimes family has to come first. While I have tried not to take liberties, the nature of his disease has meant that sometimes I haven’t been as productive as I would have liked. Knowing that you are not going to be analysing my every move has allowed me to concentrate on doing what needs to be done. Perhaps I haven’t always articulated how much I appreciate this freedom.
I tell you this now because I may not be working at my best over the next few days. This morning I dropped my wife and son at the airport for a flight that took them to the children’s hospital in Auckland. They are now safely in the heart ward and tomorrow morning my son will undergo cardiac surgery.
As cardiac surgery goes it is fairly minor, an exploratory op for more serious intervention later on, but any procedure under general anaesthetic where surgeons are poking and prodding around in his heart carries some obvious risks. In his case the added complication of maintaining blood sugars at optimal levels while being nil-by-mouth brings its own challenges.
After a long hug from me at the airport he ran off grinning, pulling his little suitcase behind him, wide-eyed with anticipation. For a week he’s been telling anyone and everyone that he is going on the big plane. He knows he’s going to see some doctors but how much he comprehends is hard to say. Perhaps the less the better.
And the hardest part for me is not being able to do anything, a feeling of complete and utter uselessness. In reality it doesn’t matter if I am ten feet away or a thousand miles. I can’t help him in those crucial hours. But given the choice I’d rather be there. To calm him before the op, to comfort him after. But I am not the only consideration and neither is he. His brothers need to get on with their schooling. They need to have their lives carry on as normally as can be, some constants they can rely on: school, friends, routine. The money still has to be earned: the wolves at the door know no compassion. And hauling the whole family up and down the length of the country is costly – costs we can put off until his big op later in the year.
So tomorrow I may appear less focused. I may be quieter than usual. I expect I’ll be checking my cellphone frequently. If I take 10 minutes out of the office at any point don’t worry, it’s going to be one of those days. Some have suggested taking some time off but sitting at home waiting for the phone to ring seems like the worst possible option.
So I’ll be at my desk as usual. I won’t be starting any ground-breaking new projects. I think I’ll just catch up on some of the mindless paperwork, nothing I can’t drop halfway through. I’ll give as much as I can but it won’t be 100%. My body will be here, my mind and my heart will be in another city.
Knowing you’ll understand eases my burden greatly.
Thanks Boss